i do not have neurotypicalism: where person-first language fails

{image is a photo of a woman who is not me shouting from a rooftop, presumably because she just realized that she doesn’t have neurotypicalism either}

“So just as one can be described as Jewish or Catholic or gay without taking away from any of the other possible descriptors, they can also be described as autistic and still be thousands of other things too. The word doesn’t negate the rest of a human being, it simply acknowledges and validates the reality of that person’s experience.”

“Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.”

“I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn’t make me any less a person, then that’s theirproblem, not mine. Let them find a way to remind themselves that I’m a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.”

“When disabled people, Autistic and non-autistic, say that they use identity-first language to refer to themselves, a common retort is “I don’t understand why you would define yourself by your disability.” To me, this doesn’t make sense. I call myself disabled because I don’t think my disability needs to be held at arm’s length, not because I believe that I’m autism on legs.”

“If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”

Ari Ne’eman

–

Oh my God.

No, seriously, oh my God.

You know when you have one of those moments – a moment in which you finally not only understand something intellectually but, for the first time, you SEE it? And you see it in such a way that it can’t ever be unseen and now you just GET it and seems so incredibly obvious and you kind of want to climb to the highest rooftop and scream out to the people on the street, “I GET it! It makes sense. It doesn’t need explaining anymore because it just IS!” And you want to share it because it’s so momentous that this thing is no longer momentous – that it’s mundane even. That it … just … is?

It started on Monday night, as Brooke and I curled into my bed together in the dark, too early for sleep, but too late to keep fighting the day.

“I went to [the middle school,]” she said, referring back to a trip she took last month before school ended.

“You did, baby,” I answered. “I’m excited that you’re going to go there next year.”

“I am too,” she said, her prosody implying a rote response, but her enthusiasm hinting at the meaning beneath it. “I’m happy that there will be AW-STIS-TIC people there,” she added.

I didn’t correct her, but repeated it back to her without the added ‘S.’ “Yup, it’s going to pretty awesome to have your autistic friends in your class.”

“Why isn’t Ben autistic?” she asked. This hasbecome a script, repeated often over the last couple of months as we churn through the words to get to the frustratingly abstract concepts hidden within.

“He’s just not, kiddo,” I said. “He has Down Syndrome, remember?”

“Down Syndrome?” she asked. I wasn’t sure if it was really a question.

“Yup,” I said. “Do you remember talking about that?” I asked.

“Uh huh,” she said. “Why isn’t his family autistic?” she asked.

“I don’t know why, Brooke,” I said. “Some people just are and some people aren’t.”

And then she changed the script.

“What does Kayla (Ben’s sister) have?”

“Hmm,” I said, caught off guard. “Well, she doesn’t really have anything. She’s what’s called neurotypical.”

“New-Ro-Tip-Uh-Cul?” she parroted.

“Yup,” I said.

“So she has New-Ro-Tip-Uh-Cul,” she said matter-of-factly.

The conversation took a sharp turn in another direction and I didn’t give it another thought. Until yesterday afternoon, when I found myself at my desk at work, suddenly wanting to run outside and climb to the highest roof to shout at the people below, HOLY CRAP, people. I get it.

Telling me that the way in which my brain is wired is something that I “have” sounds and feels completely bizarre. No one would ever, in a million years, think to describe me as “having neurotypicalism,” and if they did, I’d likely cock my head like a confused golden retriever waiting for a ball because, “Huh?”

We don’t “have” typicality. Our brains aren’t wired into a briefcase that we keep chained to our wrists lest we be separated from them by an enemy agent. We ARE neurotypical. We don’t HAVE our neurology. We ARE what it makes us.

The ludicrously overwhelming majority of my autistic friends call themselves “autistic” and bristle at the idea that they are People First! with autism. The idea that the languaging of their neurology as an adjective rather than a disassociated noun can somehow in any way compromise their personhood is abjectly absurd. That it can somehow overtake the entirety of their identity is as nonsensical as is,as I’ve described it before, the idea that referring to someone as Jewish or Catholic would pin-hole their entire identity into their religious preference or that to say, ‘He’s gay’ could somehow negate the fact that he also plays a mean guitar. It just doesn’t work that way.

To be one thing does not mean that we aren’t a million others. But … to linguistically hold that thing that we so fundamentally are, that informs and colors every part of our existence, that affects the way that we interact with the world in every possible sense, at arm’s length when it is in fact an integral part of our understanding of ourselves is to tell us in no uncertain terms that it is something which we would not and should not want to claim as part of our identity.

We HAVE colds. We aren’t people with Jewishness, Christianity, Muslimness or atheism, we ARE Jewish or Christian or Muslim or atheist (or, or, or …). We HAVE cancer. We aren’t people with gifted and talentedness. We ARE gifted and talented. We aren’t people who have maleness, femaleness, gayness, heterosexuality, autism or neurotypoicalism. We ARE male, female, gay, straight, autistic, neurotypical and myriad other glorious, integral, identity-forming aspects of ourselves. And we are any number of those things all at the same time. All of the various aspects of our identities coalesce to make us who we ARE.

It took my daughter’s linguistic gaffe to finally not just understand this, but to SEE it.

–

Ed note: I do have a friend who strongly prefers to be referred to as a “woman with autism” and I know a number of people who refer to themselves as “having Asperger’s.” I do not mean to preach to nor dictate to anyone about how they should refer to themselves, EVER. I have the utmost respect for everyone’s right to choose their own self-identification and to demand that form of reference from others. This post is simply meant to illustrate my understanding of those who do choose to identify as autistic. It also, of course, carries over into other identities, most saliently, “disabled,” which I pray my daughter will carry just as shamelessly as autistic as it too speaks to an integral part of her experience of the world and contributes significantly to the totality of who she is – an awesome, beautiful, brilliant, gloriously messy and complex human being who is, God willing, proud of everything that makes her who she is.

Brilliant and thanks Brooke for making it clear! Seriously. Maybe I haven’t finished my coffee yet but you don’t say “Amy is Down Syndrome” do you? She has Down Syndrome?” That one is throwing me! Thanks

So on the FB page, my awesome friend Julia, an autistic activist and generally awesome human, wrote the following in response to a comment. I think it might help us understand this better by offering historical context.

“The IDD community has a STRONG preference for person-first language as a result of institutionalization and systematic dehumanization. Deaf community, on the other hand, have an equally strong preference for identity-first language as a result of a history of attempts at forced normalization. The autistic community tends to lean in that direction pretty strongly, as do the Blind and Little People communities, off the top of my head.”

It makes so much sense that the response to a history of, as Julia put it, “institutionalization and systematic dehumanization” would be the evolution of person first language while those who have lived through a history of so-called normalization efforts would prefer identity first.

To back up what Julia is saying with tidbits of my own knowledge, choices concerning having your disability or even the word “disabled” used as an adjective or a noun are deeply, deeply affected by history.

The word autistic was used as an adjective (not necessarily a positive one, but an adjective all the same) for a long time before “autism” was coined as a medical diagnosis. Doctors, initially, used “autistic” or “autistic person” in referring to their patients, and based on my reading, the “person with autism” configuration was adopted primarily by parents and others who were joining into the “person-first” language movement begun by other disabled activists.

When it comes to people with intellectual disabilities, and people with Downs Syndrome in particular, there is an extremely long history of their “diagnostic” terms being used as labels meant specifically to dehumanize them and avoid recognizing them as “people” of any kind. As Julia said, this is the history that goes behind their adoption of primarily person-first language, and it makes complete sense in that context.

So like, the social and linguistic histories behind these different usages are very distinct. “Autistic” was a social/philosophical and psychoanalytic adjective that was adopted specifically to define a “new” medical condition, whereas the many, varied terms used to describe people with intellectual disabilities, or various other genetic diagnoses, were mostly either pejorative terms, or words used specifically to divide/distinguish “sub-normal” humans from “normal” humans throughout society.

A wise man once told me, ” You are never your circumstances. ” I believe we are who we are, and what we have (or dont) often defines our character, but never consumes who we are or will become.
Beautifully written, as usual!

Reblogged this on Spectrum Perspectives and commented:
Love this, and love the resources that connect to the autistic bloggers! 1. Respect the choice of the PERSON, first (Irony 😉 2. If you have to SAY “person first” to SEE the person? You’ve got bigger issues that need dealing with.

“It makes so much sense that the response to a history of, as Julia put it, “institutionalization and systematic dehumanization” would be the evolution of person first language while those who have lived through a history of so-called normalization efforts would prefer identity first.”

I really hope people read the comments as this one sentence is as thought provoking as the blog post is in its entirety

Jess, I love reading you blogs/posts. Brooke reminds me a lot of my niece who I have been raising and also has high functioning autism. Through your posts, and a few other autism mommy/daddy blogs I have seen something that is amazing: love, compassion, acceptance, openness to continuous growth, lack of judgement!! I have to say that raising a child with autism has made me a much more amazing person than I was before!!! I feel more unconditional love, I feel more understanding towards others, I feel more open to learn, I feel more compassionate and understanding. I am a better person because of autism and I do not have it (or I am not it) 😉 ! I would really love to hear how autism has impacted you as a person (your soul, your heart, your mind, your identity). I think autism has been creating a strong community of love and compassion, and I really get the sense that it is beginning to penetrate our overall culture. There are often debates about cause, treatment, etc. But when it comes down to community without politics (so-to-speak) I see a lot of love.

I will be forever grateful to Brooke for unwittingly breaking my insular little world wide open. For allowing me — nay, forcing me — to see the beauty of difference, the light and color and startling depth of dimension in the full range of the human spectrum. For giving me the gift of a life well-lived thanks to the variety and the quality of the people in it. I owe her — and autism — more than I can ever begin to repay.

this is why the push to cure autism doesn’t sit well with me. my son is an aspie and if he wasn’t, he’d be somebody else and i love him just like he is! i would like to see earlier screening and more services for all our kids, whatever their needs happen to be.

I love your telling of this realization . . . It’s beautiful, really. My children are among the majority of autistic individuals who prefer to be called autistic. They wear it with pride and dignity and want others to know it is possible to do so.

When my oldest was just turning 21 he was terribly chastised by a stranger for referring to himself as autistic. She told him it was demeaning and he should first consider himself a human.

His response, (I wrote it down to never forget) – I’ve never considered myself anything but human, that assumption is asinine, as is your ignorance regarding autism. The only demeaning thing said here came from your mouth. I am autistic, you are an ignoramus, you can call yourself whatever you want and I will call myself autistic.

Her face slowly became an odd shade of purple. It was kind of epic :o)

We are gifted and talented, but we are also people with gifts and talents… That is just as natural to say, it depends on the situation and which aspect of gifts and talents we are emphasising (or, person first VS last may be used interchangeably for no particular reason).

It is not clear cut with the disability word either. What’s most appropriate of “being disabled” or “having disabilities” is a matter of both the degree/character of the disability and the situation. If I had a visible disability, then I would say that I’m disabled. I don’t, I have some invisible disabilities that affect my options in regard to where I can be and what I can do – SPD is the best example of something that affects me a lot but people can’t see it. If I’m in a situation where I need to do something else from what people expect because of it, then I would explain that it is because I “have” SPD. My sensory perception is a deeply integrated part of my neurology in both good and bad ways that determines how I experience the world, it isn’t “luggage”. However, I still “have” SPD… There isn’t even a word to identify as “being” it.

When it comes to autism, I’d say that I have Aspergers in situations where people are not so familiar with it/autism, and maybe “I’m an aspie” in other situations. (“I am Aspergers” is not even an option … I am not Hans Asperger, and everyone can see that). I told my family that I “have” aspergers, when I told them about it.

For me, “have” and “am” means the same thing and are equally valid. The use of one or the other doesn’t indicates what the person is, but what the surroundings are like. For example what the relation is between the person’s condition and the surroundings, how alien the word makes people feel in that situation, and how visible the disability is there. When it indicates anything at all.

I usually keep out of “person first VS last” discussions because they get people winded up about something I think is a non-issue, a pointless war. The discussion is fine as dialogue (and that is what I see this post as) – providing insights into believed benefits and disadvantages of using one term or the other, but as a never ending identity war that gets people winded up in one front or the other trying to dictate what words EVERYBODY should use, as if it has to be EITHER one or the other… Nah. I think people should call themselves whatever they feel most comfortable with, and not try to dictate what others should call themselves or others.

I accidentally edited this out of the last paragraph: The post it is very well written and gives a clear insight, it is the best I have read about this topic and it was clear from the start, that’s why I read it in the first place when it came up in my reader. Thank you:-)

Great quotes. I particularly liked the quotes from Lydia Brown, but especially found Ari Ne’eman’s quote inspiring and illuminating. I love, agree, and completely know and understand the connections between autistic and Jewish, Catholic, Muslim, and homosexual identity.

I think this is also a question of the level of awareness one is at. You have got past level 1 and gone on to truly accept Brooke (and others). At that level, saying autistic means something different (and positive) than when someone else at a level below acceptance says it.

Several of the families I work with have parents at various levels of grappling with acceptance – some are just hanging on by a thin thread. They don’t even want to think of ‘the A word’…their level of being at that time. Who am I to judge or push them hard at that time?

We can both ‘have empathy’ and be an ’empathetic individual’.

When I see people who prefer a specific way, I can follow the lead. But given that I am in a country where we’re very much on level 1, when in doubt (and since I work with kids who are learning to express basic needs and are not there yet on this level of self awareness), I prefer to use ‘child with autism’. It matters to me to put the child first.

Also while it works with autism to say ‘autistic child’, it does not work in many other cases. ADHD child? Epileptic child? In a regular situation, I wouldn’t ever define a child. As a special educator though, I have to communicate information in all kinds of ways…I do need to have my personal code of comfort in addition to what others want.

Get what you’re saying – I talk of positive adoption language all the time. Language is so important and yet we do need to work with people from where they are at. They don’t know where I am at and I won’t have the time to explain it in the level of detail that it all deserves.